Diagnoses March 23 with AF.Struggling with blood thinners effects ever since, tried 5 variations. GP and arrhythmia clinic not much help.(waiting for 1st Cardiologist appointment now)Daily pain, symptoms similar Gastritis (were even worse before stopping PPI)Has anyone experienced same? What were your symptoms? How did you deal with it? I'm pushing for tests (what tests diagnose?)
In NSR day 3 of a week off as advised to see if symptoms go- sore last night.
Trying to get on with life but so difficult if I can't get off the starting blocks with thinners!
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sunlovah
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Sorry you are suffering so much as I have never found any problems with anticoagulants whatsoever. It does seem that a few people find any drugs upset their systems in some way or another and sadly you seem to be one of them.
You should probably see a gastroenterologist who may do a GI work up. Meanwhile, blood tests may be in order, including CBC and iron stores, including ferritin.
Your Cardiologist and Gastro together, hopefully will come up with a plan moving forward, with or without thinners, depending on how they access risk versus reward.
Thank you. It's really getting me down now, daily pain and worrying about not being on a thinner .On the GI list at my request. I phoned up to see the wait...1 year, (I can't wait a year to take something.)As I have been referred as 'routine"...non urgent.
Asked GP for Pharmacogenomics test yesterday, she didn't know anything about it. She took my literature to read and if viable will refer me (or I do privately). Just want to feel well again.......sigh
I really feel for you these AC don’t suite everyone and if you tell Drs they don’t seem help, as I had same stomach problems with all anticoagulants I honestly thought I would die as went days unable to eat. I’m also waiting for appointment which like yourself I’ve been told a year or longer as none urgent. If you can afford it see a natural practitioner- I couldn’t afford it myself so decided to research natural therapies and I’m on my way finally after months of pain I’m able to eata little now without pain. My journey started with watching Barbara Oneal on YT which I recommend. I wish you well you can do this God bless you
Are you still taking DOAC ,which one?I feel that it's something in my body just doesn't like DOAC/ slow drug metabolism. Trying to find out what....unsure if natural therapies will help if I don't know the cause first.
If I find the reason then might be able to work around it. Wish I could be like one of those people who could pop them in like sweeties. Good luck,
Can you make an appointment for an initial consultation with a GI specialist privately and then get on their NHS list? Costs vary from £150 to £300 for an initial consultation. If not ring the hospital and tell them you can attend for a no show or cancelled appointment - giving details of how long it could take you to get to the hospital. I am retired and have done this. I got a cancellation appointment once within 3 weeks of referral and on my way to the hospital they rang to say there was a no show for the appointment before so could I possibly get there 20 mins earlier.
I had very bad acid reflux with Pradaxa which seems to be the one most people struggle with and followed by Rivoroxaban. I managed to cope by not eating carbs, especially bread/cereal/biscuits or cake, especially at breakfast and sipping hot water frequently. I was offered PPIs but refused them. Once I changed to Apixaban I had no further problems. You don’t say which anticoagulants you have tried?
When and how you take the tablets can also make a difference. I found taking them about an hour after eating helps.
Tried..edoxaban. rivaroxaban apixaban 5mg and 2.5mg. Which still made me sore but touch less down to pain limitation now...oh and clopidogrel, weak and wobbly and so unwell on that. Breathless/bloated / tight feeling, very low appetite on all.
I always take my anticoagulant mid breakfast to avoid soreness. I don't have the problem now, but when I did I also raised the head of my bed. I also took a course of Mastic Gum capsules (expensive, but work).
Avoid fried food, vinegar, which is hidden in a lot of things like coleslaw and mayonnaise. Never overeat, stop when you know you've had enough - no matter how tasty it is.
I don't know why but yogurts also caused soreness, someone one this forum advised me to try not having them.
Try fresh pineapple, one slice per day. Don’t know why, but it helps! Also eating snacks rather than large meals - I got that info from a friend diagnosed and treated for gastritis. I wonder whether you have a slow transit time out of your stomach, looking at your symptoms. Metoclopramide is helpful for that - I’ve had it to help with that after an operation - your GP might discuss whether that could be helpful for you. I know how distressing stomach problems are, best wishes ❤️🩹
It’s something to do with bromelian which is an enzyme in pineapple. It’s suppose to help control the levels of hydrochloric acid in your stomach. I suffer badly with acid and going to try it again. It usually goes off in the fridge before I’ve finished a whole pineapple. Wondering if frozen fresh pineapple works the same? Think I’ll get some to try this time.
No, tinned doesn’t work. I think it’s only in the fresh you get the bromelian you need. The process of tinning I believe loses that. Can’t quite remember but know when I looked into it after hearing about pineapple yonks ago it said fresh only. 🍍
Yes I have exactly the same problems. I have had all of the anticoagulants including warfarin. After a couple of months I get severe nausea.
Rivaroxaban caused gastritis and a gastric ulcer with some bleeding. I currently take dabigatran at the lower dose because I can’t tolerate the normal dose.
I always take them with food. Never on an empty stomach.
I will be having a mini maze in the not too distant future on the basis that I can’t tolerate any of the meds I need to take. The aim of the surgery is to gradually stop all meds over the first 6 months. Part of the procedure is to clip off the left atrial appendage which is where blood pools during AF and forms clots.
I had an awful time when I first started Rivaroxaban but found if I took it immediately after my evening meal it settled down straight away. I have found it must be with a full stomach, a sandwich or snack is insufficient. I hope you find a solution, good luck.
The advice with Riveroxoban is to ensure it’s taken after a meal which contains fat. Touch wood, this has always worked for me…have never taken any other way.
Had coeliac test, results OK. Although I try to eat gluten free. Diet= no red meat for 30 years. One third veggi. One third chicken, breast only. One third fish.Usually salads fresh veg & salad. Although not eaten much lately , fresh food going off before I eat it.
I'm sorry for you, it's awful. I've had 6 months of it no QOL. waiting for pharmacogenomics referral test now. Day 4 off thinners, (as advised to stop a week to see) feeling my old self coming back, but quite achey in back/ under ribs. Guessing withdrawal symptoms.
I've had a peek at your profile and there's no info about age, gender or other relevant medical conditions, so may I ask why you were put on anti-coagulants? Thanks.
I will fill in.Age 69 female. First Afib episode in March 23, after exercising with shingles onset (I didn't know that I had it then). Cardioversion May. Lasted 3.5 months. 6 weeks ago I woke up in AF cardioverted back in A & E. The Night before, I went to bed with very sore/painful/bloated stomach.....coincidence?
No comorbidites.
Waiting for Cardiologist appointment, may hurry along going private, seems the way to go lately
Very interesting that you had a sore and bloated stomach the night before your recent AF episode. My ectopics and AF only seem to happen when I experience similar. In my view and experience there's a definite link between the two.
After a conversation I had yesterday I have to just put this out there - have you tried taking nicotine? Either through a vape (not good) or chewing gum (not bad).
I think they aggravated things.Had severe pains in July ..ache before I ate, abdominal pains for hours after. After 7 hrs pain, (if pain triggered AF, I'd be in it everyday!) I'd had enough, was worried about flipping back as well. Result, had an endoscopy- normal Result. But I had to stop PPI for 2 weeks before. Surprisingly after eating pain eased after stopping, I could actually eat something without pain afterwards. I d never had a problem with acid and it was never discussed with me, I suspect that it caused Hypochrlohydria (low acid) seems it can take up to months for stomach to re regulate acid levels, so maybe that's something too. Still getting the gastritis type symptoms though.
Having taken Apixaban for the last few years I started having long lasting bleeds from my nose, mouth and rear end. I also had 3 months of extreme pain and immobility after a bleed into my knee joint after a fall. Mentioned this at my AF check up withGP and then started a game of trying out other ACs. Edoxaban gave me uncontrolled bleeding from my mouth overnight . I was swapped to Dabagatran I suffered from bad acid and then vomited about 40 minutes after taking the tablet. I lasted two days being in pain and then vomiting twice a day is not sustainable.
I have a call from my GP today to discuss what to try next! I feel I have developed an intolerance to ACs does anyone else feel they have become more sensitive to them over time?
So you actually get regular checks with your GP- very impressed as I don’t get any support from mine! I had to find and see an EP privately, to get the prescription for Flecainide after the lowest dose of Bisoprolol proved dangerous for me!!
Initially, I took them OK for a week or two then discomfort started. I'm starting to think that my body is a slow metabolser of drugs, thus creating side effects. Waiting for a pharmacogenomics test.
I have tried at least 3 DOACs (Rivaroxaban, apixaban, edoxaban) all produced severe digestive problems (IBS-C), had colonoscopy but no problems. I'm currently starting on Warfarin. Not something I want to do, but it may help.
I take anticoagulants but have had gastritis type symptoms along with nausea occasionally for years before I took those and despite taking esomeprazole to help suppress stomach acid. Extra esomeprazole sometimes helps a little but by far the most surprising aspect is how very long it takes to settle down, at times, getting on for a year - but settle down it always does. I have had tests for helicobacter pylorii, a stomach bug that can cause gastritis and ulceration, but all came up negative.
The last time this happened I saw a GI specialist, had scans and found nothing of note. It's simply (!) that the gastric tract, in some people, is easily upset and settles very slowly indeed. I was also told that the lining of the tract, awash with tiny surface blood vessels can bleed very easily or, where gastric acid and enzymes wash over it, and in the presence of that bacteria, especially, can sometimes suffer soreness or even "erosion". If you already have some erosion or are prone to small bleeds, an anticoagulant might well make that worse. I suspect, though, that the body will eventually adjust and the symptoms will settle over time.
What has your GP said about the troubles you are having? Have you been checked for blood loss at all (faecal sample, etc.)?
Advised to stop for a week to confirm , by arrhythmia clinic and GP. on day 4, feeling better, aching in back and under ribs. But improving, my old self coming back. GP said , I don't need thinners if in NSR prescribed Asprin (yes I know) Arrhythmia clinic nurse said when I told them, waste of time taking them. If I flip, I'll take a thinner, ( can't take both)then go to A &E hopefully for another cardioversion, seems they'll do it if in 48 hours of going into AF. Hoping to get something sorted with thinners.
I'm a chads 2 based on age and gender, no comorbidities.
That sounds like they are on your case. Regarding anticoagulants, you can read online why aspirin is no longer used in AF as it didn't reduce stroke risk enough compared with warfarin or similar. If the Chads2 score says it's safe not to need them, then that's fine. When I had a single episode of AF following my ablation for atrial flutter, I was told I needed to be on them for life. I was 66 at the time with no other predisposing factors.
The first many people know about their AF apparently is when they have a TIA or worse, so it's important to be sure that side of things is in order.
Yes I said this to GP Ref asprin. I've spent hours online and phoning around, reading doing own research and chasing for tests etc. Thank you for your reply
A TEE (Transesophogealechocardiogram) can be done just prior to the CV tlrule out clots. Simple quick procedure. I was not on AC's when I had a CV and had the TEE first. Best etheral
One came with diarrhoea and the next ones with constipation. Now that I am on a dose of Flecainide that has virtually put an end to AF episodes, I have stopped taking anticoagulants but that comes with side effects too- added fatigue and digestive problems! Still here at 79! It seems I also have a hiatus hernia now but I do a daily morning exercise which is supposed to push things back in place as heard the drugs given for that aren’t very good for those with AF.
The only rare episodes I’ve had are extremely short as take an extra flecainide, so extremely unlikely to put me at any risk of stroke according to the EP who originally prescribed the flecainide. And I’m still here at 79!
I have a similar problem with Apixaban. However if you take Kefir the milky one everyday this helps tesco do a good one white and green bottle. Hope this helps.
I am most certainly not qualified to advise you to stop taking the ACs, in fact to do so would be very foolhardy on my part. Rather, I hope you eventually hit on a drug and dosage level which you can live with.
What I will say, however, is that if you reach the point at which you've exhausted all options and are still so unwell; with a Chads score of 2 and with your quality of life severely diminished, you may well elect at that point to have a conversation with your GP about the risk v benefit of stopping them.
Nowhere in your posts can I see that you've tried every anti-coagulant on the market; nowhere in your posts can I see that you've discussed with your GP the possibility of staying off anti-coagulants as an ongoing policy.
Sorry misunderstanding.....spoke to GP reference stopping for a week not permanently, to confirm that it is them causing and not an underlying condition. Only anticoagulant not tried dibagratran- from research is quite acidic and experiences not good . Warfarin- not keen but saving that until after testing and investigation . New DOAC trials in pipeline so hoping....
Did you try Pradaxa 110mg x twice. It has an antedote.
Gastritis - have your gall bladder. Rectum up colon and mouth down to stomach.
My gall bladder showed tiny balls. Nothing to worry about they said.
"My grandfather had his out" I said as I was finally told.
Finally operation to remove gall bladder. Surgeon found GN had disintegrated and bits stuck to other organs. Surgeon made 6 portals to allow him to pick them off.I have only 2 s/s clips.
I started one of the DOACs (rivaroxaban 20mg) in January. Within 2 weeks, I started suffering digestion problems (I suffer from IBS-C) The pain grew worse at night and I am only getting 3 hours sleep at night.
I have had a colonoscopy, and all was well apart from diverticula which are not medically significant.
I changed from Rivaroxaban to apixaban 5mg twice daily, but it did not help.
I am in the process of changing to warfarin. Not something I want to do, but warfarin is said to affect the stomach less.
I'm not optimistic, but I take my first dose of warfarin this evening. The cardiologist actually does not think I have AF. 2 Holters for a week each and his analysis of Kardio mobile (which did detect AF) was not AF at all but SVEs albeit a lot of them.
He seemed reluctant to recommend stopping anticoagulation, so I helped him out by suggesting Warfarin.
If it does not work, I might just stop anti coagulation
They could not get the inr right. They put me on doacs instead Apixaban rivaroxaban edoxaban etc then after a year could find no trace of afib so I'm on 2.5 mg rivaroxaban plus aspirin not for afib but because 4 years ago when I had an MI they could not use stents so I need dual anticoagulant /antiplatelet therapy forever
I use dabigatran (Pradaxa) these days. And I got to it after a similar Odyssey through other Xa options, which seemed to be associated with causing me UTIs and aggravating prostatitis symptoms. Not a problem for you, I know.
While Pradaxa is different, being a direct thrombin inhibitor, it comes with its own well-documented gastritis issues. And I can vouch for the fact that you should never, NEVER take Pradaxa on an empty stomach.
When I have done that the horse-pill just seems to sit in my stomach, burning a hole. Dreadfully painful!
Stomach acid is required to dissolve and metabolise it. So taking PPIs, which doctors can be a bit prone to prescribe too readily for anything 'stomachy' would probably be a bad idea.
I am inclined to think that as we age our stomach acid declines and the consequent lack of sterilisation and proper digestion can cause multiple problems for vitamin absorption (e.g. B12) and getting the wrong bacteria in the wrong place throughout our guts, with widespread consequences.
I asked for Pradaxa partly because I had read some research that suggested it might contribute to cardiac muscle remodelling, to combat AF. I wouldn't ordinarily have favoured two big capsules a day.
And, I suspect, my own issues, and those of many others, may be symptomatic of stomach acid being too low.
Curiously though, as an aside, some years ago I had an endoscopy that identified an inlet patch in my oesophagus, which was dismissed as a congenital abnormality of no significance.
It's basically a little pink patch of stomach lining displaced to one's throat - easy to overlook on endoscopy. And, like a patch of stomach, it produces acid and pepsin. And, of course, as every EP knows there can be just 3mm between your oesophagus and left atrium (inadvertently poking a radio ablation probe through there can ruin your whole day!).
So, it set me wondering about what role an anomalous little patch in my throat might play in triggering my 'lone' AF, particularly if it hooked into my vagus nerve somewhere along the line.
Which also made me aware of laryngopharyngeal reflux (LPR). For which stomach acid per se is really not the issue, it's pepsin. Apparently pepsin can migrate in aerosol form from where it should be, to go about digesting protein in places it shouldn't and which are not hardened against it- like the airways, sinuses and even inner ear. There is a school of thought that it is responsible for post nasal drip, chronic throat-clearing and otitis medea among other things.
And the thought to conjure with is that, were my inlet patch lower in my oesophagus, it would unhesitatingly be put down to being caused by acid reflux, like Barrett's Oesophagus, and not congenital at all. I believe there is even something of a difference of opinion between ENT and gastro specialists on this!
But, nevertheless, for those of us with predominantly vagal lone AF, triggered by relaxing (laying back), lying down (sleeping), eating, drinking, after meals or alcohol etc., it is worth being conscious of what's going on in our stomachs, with or without AC.
Our seemingly very different experiences of doing something very simple like getting on with swallowing medicine may be quite as telling about our particular set ups as about the medicine itself.
You echo some of my thoughts. I would like to have a stomach acid test to see if low acid is contributing to problems. I was worse before I stopped PPI couldn't eat without pain after. Acid never bothered me in my life.Endoscopy was normal...or so they say. 8 months ago, I was drug free and normal...sigh
Two minds with one thought as you say. However, as to testing for stomach acid, I did look into it too. And came to the conclusion that a half glass of water with a level teaspoon of soda bic' was probably the pragmatic way to go - the 'belch test'.
I have to say that on this criterion my digestion and acid seem to have improved by adopting a sort of paleo-keto diet. I lost a lot of weight too!
And I am minded that my own AF may at least be exacerbated by a low thyroid condition. Principally low T3 - the active hormone that GPs seldom measure.
Everything seems to go slow - heartrate, glomerular filtration, liver detox, digestion. You name it.
Most of which has also been aided with judicious supplements and hormone extracts, but is also intimately related just to maintenance of sound gut health and its feedback loops.
Also have done the belch test......no belch appeared for a long time, not very scientific I know, so unsure if accurate. Have thought about buying HCI supplements, (have you tried them ?)but would prefer to know the acid state of play first, I wouldn't want to be going the other way, but it's pulling teeth...get any tests done. Assume thyroid is okay with all tests done, will check.
Day 4 of apixaban detox, feel a lot better in myself. Except this ache under ribs and back which always comes on approx 2pm. It's the same feeling but duller ,that if I took a DOAC resulted in abdominal and back pain. I imagine that there must still he DOAC in my system...we'll see.
You need to run the burp test for a week or so on consecutive days before a normal mealtime to get a feel for whether your stomach acid is up to par. If it is, you will not be in any doubt about it with half a glass of water and a teaspoon of NaHCO3!
I got an idea mine was not up to snuff because I had a very low B12 reading out of the blue. So, I used apple cider vinegar before protein-heavy meals, as well as betaine HCL capsules. And I replenished my B12 with oral (dissolve in the mouth) tablets. I cannot over emphasise the need to replenish B12 and maintain it, folate, iron etc..
The good thing about having a freshly-minted GP stick a B12 test into my bloods for the first time is that it revealed a 'smoking gun'. The bad thing was she had another doctor phone me up just to check I was entirely compos mentis (B12 deficiency can cause demetia). What they teach in med school eh! You have been warned!
Plus, as I say, I also changed my diet quite radically over a longish period, cutting out carbs and focusing more on good fats and protein to get energy. This meant I was in ketosis and could go for longer spells without eating (there are reputed to be benefits to inducing apoptosis by fasting for e.g. 15+ hours i.e. dinner to breakfast). And not eating within three hours of bedtime is an elementary must to avoid reflux anyway.
Part of my reasoning in all this was that I figured there may be some mitochondial issue behind my AF 'substrate' (possibly linked with poor T3 conversion). And mitochondria run better on fat than sugar. Mito are less likely to be a problem for a woman, however. Men are a mitochondrial dead-end, so non-fatal DNA errors affecting mito in men don't get fixed by evolution (we get all our mito from Mum). Anytime you see a condition disproportionately affecting men, suspect a mito link.
Which blood thinners are you on? I’m taking Apixaban twice a day. I’m also taking Verapamil for the AF and Arrhythmia 3 times a day. When I started taking them I found I had an uncomfortable stomach. I read up, and found that advice was to take Verapamil with food, which I am now doing, and I don’t get that uncomfortable feeling with my stomach. I also know that when I used to be on soluble Aspirin, I was advised to take it after food. Just a suggestion. Hope you get relief.
Hello sunlovah, I've had afib for 32+ years and am diagnosed with gastritis, GERD and am taking apixaban (Eliquis),I've even been to the ER as stomach discomfort so severe at times. My primary care provider suggested I start taking Culturelle pro biotics and see what happens. Been taking it for close to a year now and it seems to have helped tremendously. I take the Culturelle pro biotics 15 billion capsule with food every morning. Hope this may help with your stomach discomfort. Have a Great Day.
Grief !! I really can't imagine 32 years of this! I too have been in A & E with this after 7 hours of it. I've bought pro biotic not started yet, I will look into what you're taking.
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